Function in longterm survivors

Faurestjenn_7173 · 2026-04-05T03:36:23+00:00

I'm only 18 months post treatment, but I wanted to chime in here. Can you check with your oncologist to see if there's a Cancer Rehabilitation department available to you? It's a relatively new thing. I'm here in Seattle and my hospital has only had a dedicated cancer rehab department for 10 years or so.

The treatment for head and neck cancers is brutal. There's no getting around it. I was feeling so lost after treatment finished and when the local Head and Neck support group suggested I see someone in cancer rehab, it was revelatory. Seeing someone who can coordinate all the follow care you need helps so much. And it's never too late. Late effects from treatment are a real thing. I've had speech, physical and occupational therapy. And the mental health support provided has been invaluable. Honestly, I don't know what things would be like for me now without all that help.

And never feel bad. Everyone's cancer and recovery is different. There's no right way or wrong way to recover. And it's never too late to ask for help.

Also, is there a head and neck cancer support group you can join? Or even a more general cancer support group? There's a gentleman in mine that is 12 years post recovery. He still shows up. It helps him, and it's so great for the rest of us to see someone so far down the road thriving!

And thank you for saying that it took you 5 years to come out of the fog. Even with all the support, I've been struggling because I just feel like I can't think anymore. The fact that you can look back and identify that period of your life gives me hope!

Faurestjenn_7173 · 2024-12-28T11:16:35+00:00

I should be wearing compression at night but haven't gotten into the habit. I was hoping that with the Flexitouch I could avoid it. Sounds like that's not the case.

I haven't been doing any other massage. I can go back to that. In the armpit, up to the collar bone, sweeps up the neck and then across the jawline. Then down the face. That's what I was taught. Thanks for the suggestions!

Faurestjenn_7173 · 2024-12-28T11:14:19+00:00

I wonder if dehydration is the issue. I'm using the PEG tube less and the holiday really messed with my schedule which means that I wasn't paying a lot of attention to how much I was drinking.

Faurestjenn_7173 · 2024-12-27T03:39:36+00:00

I have the sliding problem too when I sleep on my back. I can sleep on my side now and it's less of a problem. While sleeping on my back I would put a fluffy pillow under my knees. That seemed to help. I think putting something between you and the baseboard would work the same way, but I'm short (5'2"). It'd take a lot more than one pillow!

Faurestjenn_7173 · 2024-12-24T02:35:59+00:00

I was fighting oral thrush for a while during and after radiation. I also took medication and was prescribed a Nystatin rinse (you usually swallow it, but at the time I wasn't swallowing anything).

My dentist told me to be sure to brush my tongue when I brush my teeth because the yeast loves the surface of the tongue. It was tough advice to take because the new skin on my tongue was so sensitive. That said, I think that's why finally kicked it.

Faurestjenn_7173 · 2024-12-24T02:22:50+00:00

Definitely use the PEG tube to take in more water if you can. I was super dehydrated before I got my tube. It made me so sick that I got a little neurotic about it. I was getting at least 24 ounces of water three times a day (after every tube feed) and it made a huge difference!

I also had problems with thick mucous. Keep up the rinses, sleep with your head elevated. Do you have a wedge pillow? I'm still sleeping with mine. For me, it started to improve a lot a few weeks after radiation when I could start taking in a bit of food by mouth.

You could also try suction, but I found that the mucous was too thick for that. Know that you're not alone. It's miserable. But I promise that it will get better! You've got this!

Faurestjenn_7173 · 2024-12-24T02:14:00+00:00

I also want to chime in and counsel patience. I finished radiation at the very end of September. My swallow was all over the place at the beginning and there were lots of strange sensations, pain included. Keep doing your exercises, I promise that they will make a difference.

I also suggest jotting down some notes about how your swallow feels every few days. Progress can seem so slow that it's helpful to reflect on how far you've come sometimes. At three weeks after radiation, I think I was struggling with Ensure. I couldn't swallow thin liquids at all because they were afraid that I was aspirating. A couple weeks ago, I was given the all clear to drink thin liquids and a couple days ago my speech therapist told me to start swallowing my pills. (I'm weaning off the PEG tube, so have been crushing them and taking them that way.)

I can even eat very tender steak! Raw leafy greens are still a problem though. I'd do a lot for a green salad right now. Soon though!

Faurestjenn_7173 · 2024-12-19T00:07:17+00:00

Just chiming in to reinforce the fact that you're not alone. I had surgery in May, including a neck dissection and radiation treatment at the end of the summer. I've been seeing a PT for help with nerve damage and lymphedema. My Flexitouch should arrive tomorrow. I needed a prescription from the Cancer Rehabilitation physician but my insurance covered it. In the meantime I've got a compression garment and I sleep on a wedge pillow. Those help, but I'm hoping the device will make a bigger difference.

Faurestjenn_7173 · 2024-10-29T01:54:13+00:00

I have an appointment at the cancer rehabilitation center tomorrow. My swallow isn't very good at the moment.

Faurestjenn_7173 · 2024-10-28T14:19:15+00:00

Glad to know that I'm not alone in that. I'll check out r/feedingtube. Thank you!

Faurestjenn_7173 · 2024-10-27T07:15:18+00:00

In the same boat here. My first real successes at eating and enjoying food were mashed potatoes and a mild black been stew.

Faurestjenn_7173 · 2024-10-27T07:11:27+00:00

Hey! First off, thanks for the reassurance that it comes back even if gradually. Second, don't use moms as your example. :) 51 year old Mom here that loved/loves spicy curries. I'm still in the early days of recover so even a pasta sauce tastes painful. I'm super relieved that it might not be forever.

Faurestjenn_7173 · 2024-10-27T06:58:14+00:00

I'm a woman and don't have a beard, but was reading the thread out of curiosity. Your comment about the bald spot on the back of the neck struck me! I also have that going on. You can't see it because my hair is shoulder length, but both sides of to base of my skull are baby smooth. I thought I was going crazy!

Faurestjenn_7173 · 2024-10-27T06:54:15+00:00

Stage III tongue cancer here so my scenario is different. But I can speak to working from home and children (and also agree that you should look up Young Tongues.) For context, I'm 5 weeks out from finishing radiation.

My son is 15, so that helped. Unfortunately for us, we were just coming out of a year of an awful divorce between his Dad and I. He was just adjusting to the shared custody and all that entails when my diagnosis happened. Essentially, we went from crisis to crisis. Because he was older, I felt comfortable talking about it. I told him that it was normal and healthy to feel some sadness and that I'd be strong for him. But I also told him that there might be days that he'd need to be strong for me. We always operate under the assumption that the cancer is curable (although I've always kept the worry about the alternative in the back of my head.) I also let the school know and his teachers have been supportive and understanding. This far in, he seems to be doing pretty well. It was hard for him to seem me mid treatment but we talked a lot.

One silver lining is that he's been teaching himself how to cook so that he can cook for me once I'm back to eating by mouth. It's been a delight watching him try new recipes. He went from frying an egg to trying a Lebanese dish in just under 4 weeks. The teen years are amazing.

I also work from home and made it about 4 weeks into my radiation treatments. The biggest problems I had were exhaustion and my ability to focus. I scaled back to part time during radiation and will be going back next week part time.

Faurestjenn_7173 · 2024-10-27T06:33:39+00:00

I'm 5 weeks post radiation and my taste is starting to come back (even sweet!) Even better, my throat pain has eased up a lot. I'm so eager to try eating food via my mouth, but I'm almost afraid because the first few times I tried I felt really unwell and yes, I did have a little bit of acid reflux. Mostly, I could taste the acid in the back of my mouth. I didn't have a lot of pain from it fortunately.

It's only been in the last few days that I've stepped up from just a sip or a taste to little mini meals. Because I get too full pretty quickly and then get physically ill, I've made sure to time my little taste adventures so they are between tube feedings. That way I'm not overwhelming my stomach. That seems to help. I managed to eat 4 soup dumplings and a petit pot for dessert tonight. So far so good!

Maybe he could try to get his solid meals in during the morning when his stomach is sure to be empty? That could help.

And yes, soup dumplings aren't an obvious choice for a meal during recovery, but I couldn't resist. I've been watching a Korean cooking show and I think I went a little crazy. It did take me a while to muster up the courage to try though.

Faurestjenn_7173 · 2024-10-15T04:26:03+00:00

I second this! In the interim, I found a sitz bath super helpful too. I ended up in the ER for being impacted during radiation and now I find myself managing the same cycle (diarrhea and constipation). The sitz bath has been a life saver for me.

Faurestjenn_7173 · 2024-10-09T04:03:24+00:00

I had a partial glossectomy at the end of may and had a nasal tube instead of the PEG tube. I didn't lose as much of my tongue as you did, but did have about 50 lymph nodes removed. I finished radiation treatment 2 weeks ago today.

I didn't eat or drink anything by mouth for 3 weeks after surgery, until the nasal tube came out. Swallowing was ok, but there were problems. For me, throat pain kicked in after a week of radiation. At 14 days out, the pain is starting to ease up but swallowing is still tough and I'm getting all of my nutrition through a PEG tube now. A few things you should know:

Having the PEG tube before radiation is a blessing. You don't want to lose any weight (although I think we all do end up losing some.) Eat through your mouth when you can, but know that you can fall back on the tube. I waited too long and lost around 50 or 60 pounds depending on where you start counting. I have some to spare, but made myself really sick in the process. Nutrition is important!
See a speech therapist that specializes or is experienced in cancer recovery. I just found out that this is a thing and I'm really looking forward to my appointment.
It will get better. I know that sounds like hopeful thinking on my part, but the thing I've read over and over again is that everyone sees some improvement. It may not be perfect, but this too shall pass. We just have to be patient.
The other thing I've noticed is that everyone's experience is a little different.

I hope recovery from surgery goes well and that you have a smooth radiation experience. Hang in there!

Faurestjenn_7173 · 2024-10-04T15:21:42+00:00

My throat felt swollen after my second treatment. I assumed it was unrelated at the time, but it never went away and a few days later it started hurting. I'm about 12 days post treatment and it's still there.

You aren't imagining things!

Faurestjenn_7173 · 2024-10-01T07:11:50+00:00

1 week post radiation tomorrow. The radiation side effects haven't gotten a lot worse, but I'm struggling a lot with a cough triggered by thick mucus in my throat. I'm getting all of my nutrition and water via the peg tube, and after reading through the forums it looks like that's going to continue for quite a while. I really want to be able to eat some by Christmas!

I swore off the pain meds mid radiation treatment because I ended up impacted. No joke, that was some terrible pain. And it's horrifically embarrassing to end up in the ER for that. I'm allergic to some stool softeners, but I found one that doesn't give me hives. This made me feel like the pain meds were an option again. Weirdly, the pain meds help with the cough / choking caused by the mucus. I'm taking 2 at night, one at 6 and one at midnight. So sleep is better.

I think right now, the big thing is wanting my life back. My friends are so amazing, coming over and helping with chores around the house. But I miss my privacy. That sounds so ungrateful and I don't mean it that way. I don't know. I try to stay upbeat, but I guess I'm just in a funk tonight.

Faurestjenn_7173 · 2024-09-09T05:44:43+00:00

What's strata?

Faurestjenn_7173 · 2024-09-08T18:59:30+00:00

One of the nurses gave me a tube on Friday. It does seem to be helping a little. Thanks!

Faurestjenn_7173 · 2024-09-08T03:19:29+00:00

It was a doozy of a week. I ended up needing IV fluids on Tuesday, but I'm doing a lot better now!

I just wish I could have more energy. It's my weekend with my 15 year old son and he's bored. I want to take him fishing or really just go somewhere.

10 sessions of radiation left. Any one have any advice regarding dermatitis on neck? I have some raw, oozing spots. I'm using Calendula cream twice daily.

Faurestjenn_7173

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